Abstract
In this study we explored the perceptions of Chinese patients with schizophrenia about their treatment, mental state, social relationships, and daily life throughout the psychotic episodes. A purposive sample of 16 schizophrenia patients with heterogeneous demographic backgrounds was recruited. We collected data through face-to-face semistructured interviews. We conducted a qualitative data analysis and identified three central themes inductively: (a) negative experiences, (b) sense of powerlessness, and (c) ambivalent therapeutic relationship. Several subthemes were derived under each central theme. The participants’ narratives revealed a complex picture of disadvantage and difficulties throughout their psychotic episodes and rehabilitation processes. The themes identified are explored in detail, and their links with existing research and potential clinical implications are considered.
Schizophrenia is one of the most serious mental disorders, seriously impairing many individuals’ daily lives. It is a relatively common disorder, with a lifetime prevalence of 6.55% in China (Zhang, Shen, & Li, 1998). The progress of schizophrenia varies from person to person, but most patients have a chronic course with frequent relapses, typically characterized by exacerbation of psychosis and rehospitalization (Andreasen, 1995). Long-term mental illness status can negatively impact multiple dimensions of an individual’s life, such as physical health, well-being and safety, social interaction, economic status, and ability to work and engage in pleasurable activities. Much of the research focused on health outcomes found that individuals suffering from schizophrenia were at higher risk of weight gain, suicide, coronary heart disease, diabetes, and cancers (Faulkner, Soundy, & Lloyd, 2003; Hawton, Sutton, Haw, Sinclair, & Deeks, 2005), and often have higher levels of premature mortality and morbidity than the general population.
In recent years, the opinion of patients with schizophrenia about their own well-being and functional status has gained attention and is viewed as an important outcome domain (Simmons, 1994). Some empirical studies focusing on subjective quality of life along with other clinical outcomes have revealed a robust association between more unmet needs and lower quality of life (Becker, Leese, Krumm, Ruggeri, & Vázquez-Barquero, 2005; Slade et al., 2004). Satisfaction with the social network or social relations has been demonstrated to be associated with higher quality of life (Bengtsson-Tops & Hansson, 2001), and enduring self-related traits such as mastery, autonomy, locus of control, sense of coherence in life, self-efficacy, and self-esteem have been suggested to be important mediators and predictors of the appraisal of quality of life (Hansson, 2006).
Other studies have focused on stigma and discrimination of patients with schizophrenia. Research on public attitudes has found that people with schizophrenia are perceived to be unpredictable, aggressive, dangerous, unreasonable, unintelligent, lacking in self-control, and frightening. Moreover, a large share of the respondents would reject entering certain social relationships, such as sharing a flat (apartment) with someone with schizophrenia, recommending a person with schizophrenia for a job, or having him or her look after their children (Angermeyer & Matschinger, 1995). People with mental health problems also sometimes internalize the stigma themselves, resulting in lower self-esteem, reduced self-efficacy, and reduced prospects for recovery (Watson, Corrigan, Larson, & Sells, 2007).
Although causal links are not well understood, at worst stigma can exacerbate people’s mental health problems and can seriously affect their chances of recovery, reinforcing negative attitudes and discriminating behaviors in the process (Sartorius, 2007). Stigma and discrimination toward those experiencing mental illness are suggested to be two of the greatest barriers to recovery and development of effective care and treatment (Sartorius, 2002).Thus, experiences of stigma are considered to be an important target for intervention, with relevance for quality of life (Hansson, 2006).
Negative attitudes toward persons with mental illness are considered to exist worldwide (Jamison, 2006), and culture is a key factor in influencing attitudes toward mental illness (Nordt, Rössler, & Lauber, 2006). In China, mental illness is considered a highly shameful indictment of the whole family (Pearson, 1993). It has been reported that negative attitudes toward people with mental illness are strong in Chinese society, and the ensuing discriminatory attitudes heavily impact not only the patients but also their families (Phillips, Li, Stroup, & Xin, 2000; Phillips, Pearson, Li, Xu, & Yang, 2002). Cultural concerns of preserving ‘‘face’’ lead to concealment of illness, poor treatment compliance (Phillips et al., 2002), and intensified stigma when illness status is disclosed (Lee, Lee, Chiu, & Kleinman, 2005). Patients’ job and marriage prospects are reduced, and those of their relatives are negatively affected as well (Phillips et al., 2002). Research found that more than half of Chinese patients with schizophrenia approached nonpsychiatric services, such as traditional Chinese medicine, general hospitals, and folk healing methods (such as qigong or faith healers), in part because of feeling shameful or stigmatized (Li & Phillips, 1990; Tang, Sevigny, Mao, Jiang, & Cai, 2007).
Generally speaking, much of the existing literature on perceptions of schizophrenia is about the attitudes and perspectives of the general population toward people with schizophrenia (Chiu & Chan, 2007). Studies on perceptions of Chinese patients about their treatment, mental state, social relationships, and daily life throughout the schizophrenic episodes from their own point of view are still scarce. Lack of understanding of patients’ internal experiences and perceptions can undermine Chinese clinicians’ empathy toward the patients and might, in turn, limit clinicians’ ability to develop more effective interventions. To address this gap, we used a qualitative approach in the current study to explore the experiences of patients with schizophrenia by asking them about their mental state and experiences of daily life during treatment. The aim of our study was to produce an initial framework for understanding the experiences of patients suffering from schizophrenia and the meanings of psychosis phenomena to them in a Chinese cultural context.
Method
Sample
We used a purposive sampling design to obtain participants with heterogeneous demographic characteristics following three criteria: (a) that they had a medical diagnosis of schizophrenia following the International Classification of Diseases (World Health Organization, 1993); (b) that they had previously been hospitalized and were in contact with mental health services and receiving antipsychotic medication at the onset of the study; and (c) that their families and clinicians demonstrated that they had sufficient competence to provide informed consent.
We finally recruited 16 eligible Chinese patients from the outpatient department of a mental hospital in Shanghai, China. All of the participants were introduced to our study by their psychiatrists following the selection criteria described above. Five of the participants were men and 11 were women. Individuals ranged in age from 21 to 52 years (mean = 34.4 years). Ten of the participants were currently married, 3 were divorced or separated, and the other 3 had never been married. Five participants had completed a bachelor’s or more advanced degree, and 11 had a high school education or less. Eight participants were employed, 3 were students, and 5 did not have a job. As for the length of total psychotic episode, the longest were around 15 years and the shortest were less than 1 year. Each of the participants had been treated in hospital at least once.
We compensated each individual 100 RMB (Chinese currency; about $16US) for participation in our study. Any information that would imply the participants’ identities has been changed or omitted. All procedures of our study were proved by the Ethics Committee of Tongji University School of Medicine. Detailed introduction to the study, including the research procedure, confidentiality, and compensation was made to the participants and their families, and informed consent was obtained from all participants after they agreed to take part in our study.
Interview
From August 2010 to January 2011, we collected data through individual, face-to-face interviews. Each interview lasted from 45 to 90 minutes (mean = 60 minutes) and was carried out either in a private office or a consulting room at an outpatient psychiatric clinic. The first and second authors, who specialized in psychiatry, worked together to conduct the interviews. At the onset of the study, each researcher had worked as a psychiatrist in hospital for at least 3 years and neither of them had personal experience of psychosis. The second author is a psychiatrist who worked in the hospital from which the participants were recruited, and the first author served in another mental health hospital in Shanghai.
We used a semistructured interview schedule consisting of open-ended questions based on the aims of the study and some follow-up probes. The interview covered participants’ reflections on their experiences before, during, and after having treatment for psychosis. The interview schedule included four aspects relevant to the participants’ psychotic experience: (a) their feelings about the treatment for psychotic difficulties, (b) the influence of a diagnosis of schizophrenia on their daily lives, (c) changes after psychotic treatment, and (d) their views on their lives going forward. We used the interview schedule flexibly to maximize the participants’ opportunities to tell their stories in their own way.
In each interview, one of the two researchers was randomly selected to conduct the interview as main interviewer. The other researcher would work as an interview assistant and observer, being responsible for taking notes and providing necessary support and assistance. Because both the participants and interviewers were native Mandarin speakers, all interviews were conducted in Mandarin and no translation was needed. After obtaining participants’ permission, we taped all of the interviews with a digital recorder. We also made notes as necessary during the interview process to help track salient aspects of the interview. Immediately after each interview, we transcribed the audiotapes into text verbatim and cross-checked each other’s transcriptions for accuracy.
Data Analysis
We coded all of the transcripts using constant comparative analysis (Strauss & Corbin, 2007). The first and second authors coded the same transcripts of interviews independently, but not synchronously. First, we conducted line-by-line coding to identify substantive codes associated with the research topics. These were labeled as initial codes. In the second step, we made constant comparisons among the initial codes and developed superordinate categories and themes by combining similar codes. During the next phase of data analysis, the superordinate themes were collapsed into larger central themes. These themes and the clusters of subthemes were then used to describe the participants’ experiences. We conducted data collection and analysis concurrently. In the process of gathering further data, the categories and themes that emerged early on were repeatedly corrected and refined on the basis of the additional data.
We adopted three strategies to improve the trustworthiness of our data analysis. First, to minimize the influence of analysts’ bias, the two analysts met regularly to review and cross-check the themes each had obtained. Discrepancies were resolved through discussion and joint review of the audiotapes. Second, prior to beginning interviews, we considered our assumptions and past clinical experiences that could influence our later analysis. Researchers’ memos of personal reflections were recorded to track the influence of researchers’ thinking on the analysis (Boyd & Gumley, 2007). Third, to provide more perceptions, we invited two psychologists who worked in Tongji University to cross-check our results. Their comments and suggestions were adopted to revise our results.
Results
The participants’ narratives revealed a complex picture of disadvantage throughout their lives. Three central themes identified in the analysis were: (a) negative experiences; (b) a sense of powerlessness; and (c) ambivalent therapeutic relationship. Results also identified subthemes within these central themes. Major themes were those that emerged as significant across the analysis, and there would be overlap between themes/subthemes. Although the themes are interrelated, they do represent different aspects of a patient’s life. In the following sections we describe the results of this analysis. Quotes are provided to illustrate the themes described within the context of the individual interviews. Identifying features in the verbatim excerpts have been changed to maintain anonymity.
Negative Experiences
There were two major categories in the participants’ accounts of their negative experiences: (a) unwilling experiences of hospitalization and (b) confused past experience.
Unwilling experiences of hospitalization
All of the participants mentioned that they were not voluntarily hospitalized for treatment initially. The admission of some participants was induced by deceit by families, and others were sent to the hospital by force by their families or police. The majority of participants did not self-identify as having a “mental disorder.” Most participants explained their past psychotic experiences as interpersonal conflicts, temporary stress, or bad reactions caused by pressures in daily life. One unmarried man said,
I was sent to the hospital by my family by force. I do not think I have some illness in my mind. I think I am just a little sensitive. You know, I do not have a job. That makes me unhappy, irritated, and sad sometimes. I suppose that everything would be okay if I could find a suitable job. However, my family did not give me the chance. They did not consider what I said seriously, but just took me to the hospital.
Confused past experience
Many participants expressed their confusion about the diagnosis made by the psychiatrist, and the changes that happened to them. Most participants admitted that they had been a little psychologically disturbed and behaved a little “abnormally” during their psychotic episodes, and in turn, had troubled their families and friends. Some participants explained the nature of their difficulties as being caused by stress in work, being possessed by evil spirits, or having dysfunction in some organs of the body. The following excerpt was selected from one man’s interview:
Actually, I have no idea what had happened to me at that time [his psychotic episode]. I just felt as if there was fire in my breast. You know, that made me very anxious and [I] wanted to fight with other people. Everything could irritate me easily. The explanation of Chinese traditional medicine was that my organs were Shang huo [overactivated]. Anyway, I am very confused. How could this happen?
A Sense of Powerlessness
There were three major categories in the participants’ accounts of their sense of powerlessness: (a) changes in self, (b) pessimism about the future, and (c) a sense of being controlled.
Changes in self
Most participants experienced feelings of deficit and regression in their occupational competency, academic ability, or interpersonal competence. For example, one participant who used to be a businessman complained that his psychotic episode had reduced his occupational competency:
I did very well in my work before I got sick. Sometimes I even felt working was so easy that I could handle it as I wished. However, I became so incompetent in my job after being ill. Sometimes I found that the only thing I could do was just to follow other people, without my own ideas and plan.
Coupled with the decrease in personal capabilities, most participants said that they had lower self-confidence than before. After their psychotic episodes, many participants reported a lack of confidence and low self-evaluation. They felt that they could not control their own destiny and life. The following quote was selected from the interview of one participant:
I was very self-confident before. However, all my confidence went away after the psychosis. Now, I get very anxious even if I’m doing the shopping. For example, I worry, when I buy eggs, about whether I have got the right number. I mean, I just cannot trust myself now.
Moreover, all of the participants expressed that they were reluctant to maintain social communication or join in social activities after treatment. Instead, some participants turned their attention to activities without meeting others face to face, such as using the Internet, reading, or playing video games. For example, one participant liked dancing, and she attended parties frequently before the treatment. At the time of interview, she had given up this hobby and chose to jog every evening. She said, “The reason why I go jogging every night is that there are few acquaintances in the evening, and then I do not need to face them.” Another man even thought about resigning from his current job because of his feeling of deficit in occupational competency:
I think I should give up my position of department manager in our company. Then I don’t need to do too much work, and do not need to meet different people every day. I think it would be better for me to stay in the office, without other people bothering me.
Most participants described becoming sensitive and vulnerable in their daily lives. First, they felt much more sensitive to daily stress and interpersonal relationships than ever before. Many participants paid much attention to other people’s comments about them. They were always worried that friends or family members would perceive what they did as abnormal or as “psychiatric symptoms,” even if they were behaving very well. The fear of being considered a psychiatric patient, if they were to do something “wrong,” made many participants withdraw from social life and activities. Participants expressed feeling frustrated, irritated, anxious, and distressed because there were some people who would perceive whatever the participants did as abnormal or psychotic. Many participants even worried that they would lose control and autonomy over themselves if they were misunderstood by other people. For example, one man described his feelings of sensitivity as follows:
I am like a timid dog every day. I dare not talk with other people, and dare not do what I want to do. I am always worried that I would say or do something wrong that would remind other people about whether or not I am going to relapse. Otherwise, my family will take me to the hospital again.
Additionally, some participants reported feeling increasingly sensitive to their physiological and physical changes. They would become very anxious and nervous about “abnormal” feelings, and worried that these feelings were caused by the medication or psychiatric disease. As one man shared,
I always worry about my health, even if there are only minor changes happening in my body. A few days ago I got dizzy. Maybe it was just caused by a cold. However, I was very anxious and worried that it was the side effect of the antipsychotic, or caused by something else bad.
Similarly, another participant described her anxieties and fears as follows: “Anything abnormal or stressful happening in my life will trigger my anxiety about my illness. I worry about my health every day. I am afraid that my disease will recur one day.”
Bothered by these uncomfortable feelings, most participants tried their best to seek support and comfort from others, especially their families, physicians, and psychiatrists. Also, some participants tried to develop effective coping strategies, including traveling, enjoying music, practicing yoga, and so forth. However, participants reported that these strategies could only relieve their negative emotions and experiences temporarily, but could not eliminate their painful feelings completely.
Pessimism about the future
Thirteen of the participants described pessimistic opinions about their future lives, including their work, education, family, marriage, and the potential influence of the psychosis on their descendants. The participants expressed a lack of confidence about their lives in the future and doubt that they could control their own destinies. One woman stated,
I found from the Internet that this kind of disease [psychosis] could be transferred to the next generation at a very high rate. That makes me very anxious. I think it is horrible. I dare not to even get pregnant.
Moreover, all of the participants mentioned that they did not have any dreams about their future lives any more. Most participants just hoped that they could be healthy and enjoy peaceful and quiet lives. They thought that dreams were unrealistic for them. Most participants said that they would be very satisfied as long as the psychotic symptoms did not recur. The following excerpt was selected from one man’s interview:
For me, the future is unrealistic and unpredictable. The only thing I can do now is just to take care of my daily life. I dare not to expect a better tomorrow. Sometimes I even wish that world war would break out, so that nobody would pay attention to me anymore.
A sense of being controlled
Most participants felt controlled by family members and, especially, by psychiatrists. A middle-aged woman expressed her passive experience of taking antipsychotic medication: “I took medicine just because the doctor and my family insisted. You know, I was always reluctant to take pills. I would have stopped taking the antipsychotic if my family had not supervised me on the medication.” Some participants were not confident in believing their own perceptions and trusting their own judgment and feelings toward themselves after being treated as psychotic. To comfort themselves, the participants had to consult mental health care providers, including psychiatrists and nurses, about their illness and current mental status. Some participants considered the psychiatrists as judges who could give them clear definitions about their condition. One woman said,
I have to see my doctor. You know, at least the information my doctor provides can comfort my family and make them less anxious. Although sometimes I do not agree to what he [the psychiatrist] says, I have to follow his advice because, you know, he is a doctor. In fact, I do not feel I can take charge of my life. I am controlled by the doctors and the medicine they prescribed. I even have no right to express my thoughts and feelings.
Similarly, another participant also described her complex feelings toward the psychiatrists:
I think I am dependent on the doctors. Although at the same time I doubt them. I had once consulted psychologists, Chinese traditional medicine doctors, and a psychic about my illness, and they could not help me out. But the psychiatrists could help me. However, the diagnosis they gave is just like a sentence delivered by a judge. You have to accept it, although you are not willing to. This sentence could even impact on your future life, your occupation, and your retirement years greatly. I have to say the doctors own such great power that I cannot deny them.
Additionally, most participants felt themselves being suspicious of and supervised by their respective family:
My family members do “care for me.” Sometimes they will exaggerate what I do, and take it as some bad signs. They will push me to seek medical aid. If I do not go, they will consult a psychiatrist themselves for me. I have to obey them in every aspect of my life.
Ambivalent Therapeutic Relationship
Two major categories were included in the participants’ accounts of their sense of ambivalent therapeutic relationship: (a) different understandings of mental illness and (b) boundary.
Different understandings of mental illness
None of the participants admitted that they were mentally ill, and most were reluctant to take antipsychotic medication. Some participants explained the nature of their state as being caused by stress in work or interpersonal relationships, being possessed by evil spirits, or having dysfunction in some organs of the body. Some of the participants said that they would prefer interventions such as psychotherapy or consultation when admitted to the hospital rather than taking medication. One participant commented,
My understanding is that the word psychosis refers to a kind of state when somebody gets mad. As for me, I think I am just a little more irritated than other people. I think it is quite understandable. If you say I am the same as the psychotic patients, I cannot accept that.
Another significant topic from the participants was their expectation of terminating the medication. Most participants hoped the medication could be terminated as soon as possible. They felt that taking medicine meant “being a psychotic patient,” and the termination of medication meant recovery from the psychotic disorder. Although the psychiatrists had emphasized the necessity of medication for managing psychotic symptoms, many participants still tried to stop the medication without their psychiatrists’ or family’s knowledge, which often resulted in recurrence of the psychotic symptoms and retaking of pills. For example, a participant who had taken medicine for about 5 years described her perception and experience on medication as follows:
Medication does not make me feel uncomfortable in my body, but I am still reluctant to take pills. Taking medicine means I am still a patient and do not have the ability to be responsible for myself. Actually, I am very anxious and hesitating, and feel very uncomfortable when I see the pills.
Moreover, some participants tried to find other means to replace the medication. A few participants thought Chinese traditional medicine might be a good substitute for the antipsychotic. Some had spent a great deal of money on treatment with Chinese traditional medication, but the outcome was not satisfactory. One participant commented, “My parents have spent thousands of RMB [Chinese currency] to see Chinese traditional medicine doctors, but my condition did not appear to improve.”
Besides Chinese traditional medicine, Chinese Feng Shui masters (practitioners who optimize the physical environment to influence individuals’ outcomes) or fortune tellers had also been consulted by some participants for alternative treatment. One participant told a story about consulting a Chinese Feng Shui master:
My mother took me to see a Chinese Feng Shui master. He thought my mental illness was closely linked to the directions of our door and my bed. To be honest, we did not quite believe that. However, my mother thought the master’s suggestion was worth trying. I can totally understand why Mother would like to take his advice. I know she has been so exhausted by my illness and would try any means to help me. We changed the directions of our house door and my bed, but it seems that nothing special happened.
Two of participants expressed that they wanted to try surgical treatment for their psychotic sickness, if possible: “I have no idea. Maybe there are some kinds of surgeries I can try. I mean, maybe my illness could be totally cured with surgery.”
Our analysis demonstrated that participants had different understandings about “rehabilitation” of their psychiatric disorders. With regard to the standard of recovery, most participants thought themselves fully recovered. Many participants thought they were healthy and fully recovered because their symptoms disappeared, their emotions were kept peaceful, and they experienced nothing uncomfortable in their bodies. However, most participants’ families and doctors still regarded them as psychiatric patients even though the participants were doing better in their lives. Hence, many participants became confused about what real rehabilitation means. For example, one woman said,
In fact, I think I have recovered from my disease. The symptoms have gone away. However, my family and doctor think I am still a little sick and they continue to ask me to take medication. If I go somewhere nobody knows me, I can totally do things like a healthy person.
Boundary
Most participants described their conflicting attitudes and feelings toward their mental health care providers. Above all, most participants respected and expressed their appreciation for their psychiatrists or nurses. Participants said that they had gotten help and support from the staff, and said that psychiatrists would be the most important people to provide them with professional suggestions if new problems emerged. Also, most participants expressed that they felt respected by the health care providers, which was vital to them, and often helped them feel warm deep inside their hearts. As one participant described, “Every time I have got some uncomfortable feelings in my body, the first thing coming into my mind is the hospital. You know, my physician can tell me what I should do and help me out of my confusion.”
Although feeling that they were cared for and respected by the psychiatrists, most participants could feel the boundary between them and the mental health providers. Many participants found that the relationship between themselves and the psychiatrists and nurses was in some ways superficial, and not real friendship. Although the daily interactions with health care providers seemed friendly and equal, it was superficial. A participant said,
I know what the doctors are thinking about. They just take me as a patient. I mean, they just want to treat me like a client. They do not care about other things of mine. You know, I give them money and they provide the services for me. It is like a trade.
Hence, many participants did not wish to maintain contact with their psychiatrists outside the hospital, and most wanted to limit interactions with the psychiatrists to within the hospital setting. Some participants thought they could not obtain real understanding and empathy from others, especially the professionals. One participant stated,
I know that other people, I mean, doctors and nurses, have given me a lot of help and support. However, I feel they just want to help my family to control me. Actually, the thing I really want is their understanding and support. However, nobody really cares what I am thinking about. I do not think they respect or understand me.
Discussion
In this article, we have presented a qualitative description of the personal accounts of experiences with psychosis and treatment of individuals with schizophrenia. Our analysis has provided a deeper understanding of the impact of the diagnosis of schizophrenia on a person’s life, and produced three central themes: negative experiences, a sense of powerlessness, and ambivalence about interactions with health care providers.
Negative Experiences
In our study, participants’ experiences of being treated against their will and feeling confused about their mental changes were identified as two subthemes of their experiences of negative emotions. Previous research has demonstrated that many persons suffering from serious psychiatric illnesses have experienced treatment as undesirable (even intolerable), and therefore they resist or refuse treatment (Barnes & McPhillips, 1998; Fenton, Blyler, & Heinssen, 1997; Fenton, McGlashan, Victor, & Blyler, 1997; Marder, 1998). Similarly, Pan, Xie, and Zheng (2003) found that in China, only 18.5% of psychiatric patients admitted to psychiatric hospitals were voluntary, whereas 59% were detained at the request of their families, and 22% were taken by the police because of aggressive behaviors. Also, it has been demonstrated that mental illness impacts patients’ functional capacities, such as the ability to get along with others, to learn, to work in competitive environments, to take care of personal needs, and to engage in normative standards of behavior, and that these decreased functional capacities bring negative feelings to the patients (Gerhart & Brieland, 1990; Ritsner, 2003). The participants’ accounts in our study are consistent with results of past research. Their experiences of involuntary treatment and mental changes in themselves contributed to negative feelings about their treatment and themselves.
A Sense of Powerlessness
Three subthemes—changes in self, pessimism about the future, and a sense of being controlled—constructed patients’ sense of powerlessness in this study. Some self-related traits such as loss of mastery or autonomy and low self-efficacy and self-esteem have been explored in previous research (Ritsner, 2003). Meanwhile, it has been demonstrated that serious psychiatric impairment affects multiple dimensions of an individual’s life, including physical well-being and safety, social interactions, the ability to work, engagement in pleasurable activities, and lower subjective quality of life (Fenton, Blyler, et al., 1997; Fenton, McGlashan, et al., 1997; Huppert, Weiss, Lim, Pratt, & Smith, 2001). The participants’ accounts in our study are consistent with the results of this research.
A salient theme in these participants’ accounts was their lack of clear judgment about their personal experiences in many aspects, including physical experience, mental state, and relational factors. The participants often felt nervous, sensitive, and vulnerable in daily life, and could not be certain whether their feelings or judgment were “normal” or not. They lost their self-confidence and became powerless in their life. Such powerlessness, in turn, became chronic stress that might have intensified their negative feelings.
Prior studies found that persons with schizophrenia expressed significantly less hope than the general population (Landeen & Seeman, 2000). Many patients hold pessimistic views on the outcome of schizophrenia (Hoffmann, Kupper, & Kunz, 2000), and might not have hope of recovery, or even a satisfying life. In our study, patients described pessimism about decreased life skills and relapse issues, as well as distressing life situations such as the lack of a stable occupation or regular income, and family, marriage, and hereditary issues. These obstacles, together, might have contributed to their sense of powerlessness. It is noteworthy that in empirical studies on psychiatric rehabilitation, hope was found to be a factor that contributes significantly to the progress of recovery from mental illness (Deegan, 1988; Jacobson & Greenley, 2001). Our results are congruent with previous findings, and suggest that clinicians should pay more attention to patients’ opinions about their future when providing treatment.
Previous research shows that psychiatric treatment usually controls certain problematic symptoms, but might not lead to a meaningful recovery and satisfying life for the patients (Barnes & McPhillips, 1998; Fenton, Blyler, et al., 1997; Fenton, McGlashan, et al., 1997). Psychiatric medication can be stigmatizing because it marks someone as a “psychiatric patient.” The label of mental illness is usually associated with negative reactions such as stereotyping and prejudice that might lead others to react in a negative manner, and which contribute to negative psychological, economic, and social consequences for individuals with schizophrenia (Hinshaw, 2005; Pescosolido, Perry, Martin, McLeod, & Jensen, 2007). Similar to these findings, findings from our study imply that the experience of serious mental illness might in itself deny individuals the ability to author their own lives. These participants were in an ambivalent place of being controlled by others, including their families and psychiatrists. Thus, they might have to develop new behavioral and cognitive strategies to adapt to their new lives.
Prior research also implied that patients’ assessments of their own conditions were different from both those of the treating physicians and from those determined using objective rating scales (Larsen & Gerlach, 1996). However, the powerful medical narrative from mental health professionals might change patients’ perceptions and experiences of illness (Frank, McGuire, & Newhouse, 1995); this kind of change might cause patients to lose valued social roles, sense of self, and dreams in life, and might, in turn, make them feel powerless.
Ambivalent Therapeutic Relationships
One common theme in our analysis was that participants presented alternative explanations for their psychiatric conditions and rehabilitation. Patients sometimes explained the pathogenesis of schizophrenia from a psychological perspective (such as personal stress or temperament), being possessed by evil spirits, having dysfunction in some organs of the body, or via a traditional Chinese medical theory instead of current medical understanding of psychiatric illness. Accordingly, participants preferred nonpsychiatric interventions, such as traditional Chinese medicine, surgical operations, psychotherapy, and folk healing methods (such as faith healers) to psychiatric medication.
The different understandings of mental illness might have been a response in which patients attempted to exert the little control they had, through which they could get rid of the label of “psychiatric patient.” Moreover, this divergence might be due in part to the limitations of people’s knowledge about psychiatric illness (Jorm, 2000). Another cause might be psychiatrists’ poor training in psychiatry in China, because most of them receive basic medical training only, without psychology or psychotherapy training, and might not be able to provide a convincing explanation about the nature of psychiatric illness to the patients.
According to several researchers who have themselves experienced serious mental illness, there is more to recovery than the alleviation of symptoms, deficits, and dysfunctions (Brown, 2006; Deegan, 1996; Repper & Perkins, 2004). However, mental illness is usually considered in terms of limits to self-determination or danger to self or others; thus, patients’ autonomy and individualism are rarely considered in clinical practice. Participants’ different understandings about psychiatric conditions and rehabilitation might reflect the conflicts between individuals affected by mental illness and mental health service providers in China.
Our study also showed participants’ perceptions of superficial and ambivalent relationships between mental health professionals and patients. The current findings were consistent with some previous research (Boey, 1998). Mental health professionals sometimes hold negative stereotypes toward patients (Nordt et al., 2006). Meanwhile, many people with mental illness do not feel understood, and might not trust their mental health care providers (Breeze & Repper, 1998; Thomas, Shattell, & Martin, 2002). In addition, participants’ sense of powerlessness in the face of the control clinicians had over them was a meaningful issue; these might be a reflection of the problems inherent in the psychiatrist–client relationship. The lack of trust or equality in mental health services might be one main reason contributing to participants’ feelings of reluctance and helplessness when working with the clinicians.
Limitations
Our study had several limitations. First, ours was a small, purposive sample of patients recruited from Shanghai, one of China’s biggest cities. Their suggestions and opinions might not reflect those of patients with schizophrenia in other contexts, such as patients in other regions, in smaller cities, or patients with unsatisfactory outcomes. Meanwhile, to obtain more detailed or valued information, we had selected “well-rehabilitated patients” with better education, or those who were at least good at oral expression. It would be helpful to conduct further theoretical sampling including less-educated participants with unsatisfactory outcomes in future research, and return to the participants to explore how they feel our themes do or do not represent their experiences.
Third, the participants’ responses in interviews might have been influenced by the interview setting, in which the participant was clearly positioned as a service user and the interviewer as a mental health care provider. For example, it might have been intimidating for the participants to be interviewed by two psychiatrists in a psychiatric facility. However, feedback from the participants and their families implied that the interview setting did not have remarkable impact upon their answers and responses. Most participants seemed to feel comfortable when being interviewed by psychiatrists in the hospital.
Fourth, our position as psychiatrists might also have influenced the interpretation of the dataset. Our educational background of psychiatry might have drawn more of our attention to the participants’ physical complaints and psychotic symptoms, and further, resulted in the ignorance of participants’ psychological items. Moreover, in China, psychiatrists often have a sense of superiority in the face of patients with schizophrenia. This might have induced us to regard the participants as more powerless and in turn, give more weight to negative comments during the analysis. Although the two psychologists’ comments could somewhat enrich our cluster of themes, further research involving more researchers such as psychologists, social workers, and nurses is still suggested.
Clinical Implications
Mental health professionals have a critical role in the development of more clinically sensitive and effective interventions. Our findings imply that the ambivalent therapeutic relationship, especially with power and control issues, might influence interventions negatively. Our professional position ought to be concerned with the psychiatrist–client relationship. The findings also imply that, based on the patients’ perspectives, interventions including encouragement, a person-centered therapeutic model (in which people’s sense of self is valued), developing mixed coping strategies in response to psychosis, reducing social isolation and stigma associated with psychosis, and entertaining multiple explanations for psychosis might be alternatives for the treatment of schizophrenia.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.